Archive for July, 2007

Kind of short on time and news this week, so I just thought I would post a new(ish) picture of Ben. Don’t forget to visit our team page for the buddy walk and sign up to walk with us on September 29!! We’ve raised a bit so far, but we are a long way from our goal of $2,000. Visit http://buddywalk.kintera.org/pcds/randallfam to learn more.

*much squeaking as I convince Ben to kiss me. His kiss consists of grabbing my face, leaning forward and slobbering his open mouth and tongue all over my cheek. He pulls away with a HUGE smile*

Scott: “Ben, kiss daddy”

*this does not happen, and instead Ben grabs Scott’s finger and munches down on it*

Scott: “Holy *&$#%! Look at this!!!”

Ben has his first tooth. 🙂 And, since we got sick of looking at them, I totally did not associate the signs of the past week or so: lots of drooling, screaming and shouting during meals and drinks, minor diaper rash, wakefullness. We both knew that it would happen this way. 🙂

I tried to get pictures, but all I got were red blurs of my finger in Ben’s mouth. 🙂

Once again this year we will be walking in the Buddy Walk to help raise funds and awareness for Down Syndrome. Some of you will recognize the language in this entry because I just sent an Email to you that looks remarkably similar. The website for fund raising for the walk gives us a “form letter” to recruit funds, but instead, I’m going to just let you know why we walk in the Buddy Walk and why your donations are important (and they are important!)

This will be the third annual Buddy Walk for our parent support group: Parents of Children with Down Syndrome (or PCDS). Last year at this time we, the Randalls, came to you with the same request for support, and boy were we overwhelmed! People we didn’t even know helped us out; we aimed to raise $500.00, but instead our team raised over $2,500.00!!! We hope to match or surpass that total this year. Why is this money important? The more time goes by, the more answers we get to that question. The support we receive is amazing, but the information is priceless. PCDS sponsors educational workshops and brings in speakers to their monthly educational meetings. This summer we got help and support learning to navigate the process of getting private therapy for Ben. In the spring I was able to attend a conference on Down Syndrome sponsored by PCDS. They brought in a national speaker, in addition to several local and state resources. Every day we know we aren’t alone and the answers to our questions can be found in the friends we’ve met.

Maybe right now isn’t the best time for you to donate to our walk. If that is the case, maybe you would consider walking with us instead. In 2006 our team numbered close to thirty people, and it’s possible we could do that again. Maybe what’s right for you is to both donate and come join us on the 29th of September. Either way, your support is appreciated.

If you would like to donate to our team, you can do so online. The website is easy and it is secure. The address is: http://buddywalk.kintera.org/pcds/randallfam . For those of you who registered last year, the site is much easier to navigate this time around. If you register to walk, you can donate to our team page, or you can create your own personal page as part of our team. The money you raise will all go to PCDS, and will count toward our team goal of $2, 000.00. If you know someone who knows about Ben, invite them to come and walk with us. We’ve Emailed a lot of people, mostly because we aren’t sure who still reads this website…so spread the word!!! Our steps add up, and the walk adds up to enormous support to the Down Syndrome community.

I hope we see you on September 29, and I hope you consider donating to our team for the walk. Thanks for everything, but mostly for all of your support and prayers for Ben’s continued health and success.

New layout, because I was bored. This page is also easier to navigate…you can see all the things you can check out on the page. Along the right side you will notice several titles of old entries, in case you’re catching up you can jump what you missed.
We love our readers. haha.

We’re having one of those periods with Ben where everything is growing and changing. The past month on the Pediasure (which he no longer is drinking, per agreement with his pediatrician) and now on the meds for his reflux have made a huge difference in Ben’s attitude and appetite. He is eating normally again, which is a huge relief. The only thing that Scott and I have noticed is that Ben is sleeping more…on average an hour more a day. I’m not sure if this is because of his heart, or his increased activity (because he is much busier than he used to be). It is most likely a combination of both. The good thing is that even though his naps are long, he is very very interested and involved in what is going on around him when he is awake. Interested and active. Ben is now doing multiple rolls at a time, scooting around on the floor (not creeping, just rolling and wiggling around), grabbing at anything within reach, and generally interacting with his world in a way that is a joy to watch. When Scott and I get close to him he reaches out to us with a big smile and wants to explore the features on our faces with his hands. He loves noses especially.

Therapy is going SO well!!! Two hours a week are making Ben a very active boy, and his progress is amazing. He can now sit on the floor, supporting himself on a small table in front of him for about thirty seconds. He is so much stronger. If there is no table, all he needs for support is a hand at the base of his spine. I really think he will be sitting independently soon. He is so strong. Ben also spends a lot more time on his tummy, lifted up on his elbows and watching the world. He also likes to flap his feet from this position like a small seal. It’s hilarious.

One thing that we have to start working on all over again is self-feeding. When Ben went through the stage of not eating, he didn’t eat anything…not even his graham crackers. Unfortunately, we are back at square one with self feeding…he isn’t interested in it again…so we’re trying lots of different foods to find one that he likes that will encourage him to pick it up and feed himself. He will still bring something to his mouth, but he isn’t interested in eating it. Maybe he is waiting for teeth, who knows. There is an amusing picture of Ben with a cheeze it cracker if you click on the link.

My sister Karen spent a few hours with Ben yesterday so Scott and I could go out and see Harry Potter. We put Ben down for a nap before we left, and apparently when Karen woke him up he was unhappy. It seems that he was confused because mom and dad weren’t there. She said that he did well the rest of the afternoon, despite not wanting to eat dinner for her; but when Scott and I walked in the door, Ben had a total melt-down and started crying. Seeing mom and dad was too much…and he wanted to convince us that his time with Aunt Karen was the WORST.THING.EVER. It was funny and heart breaking all at the same time. Both Ben and Karen made it through the experience with minimal scarring, but I think it might be awhile before she agrees to babysit for us again.

Scott and I love to camp. We love to be outdoors, we like to sleep in tents. The smell of campfire makes us woozy with delight. We talk often of how it will be when we take our kids camping. I actually had an argument with someone once about whether or not you could take kids backpacking. We cannot wait to take our kids camping. So it was with much fanfare and pomp (in our tiny brains, anyway) that we bought our first “family size tent” and took Ben to sleep in it for the first time.

Why family size? Because the tent we own is for backpacking, and it’s a two person…meaning it actually sleeps a person and a half. And even though Ben is half a person, it still leaves Scott out with the mosquitoes. So we bought this four person thing, it’s HUGE…like it’s a condo compared to the other tent. We arranged everything…two foam pads on the floor on top of each other, covered by an opened sleeping bag (one of the flannel lined ones that Ben would sleep on without bursting into flame). We then set up two air mattresses, one on either side, on top of the sleeping bag, so that we had a “Ben Gutter” down the middle. Sleeping on air mattresses was really quite luxurious of us, but it was comfy.

Ben did GREAT! He slept all night (except for when he woke up with a diaper emergency at four am, but really, wouldn’t you?). The problem is that Ben talks in his sleep. We didn’t know this, since he usually sleeps in his own room, and so Scott and I had trouble falling asleep.

In the morning, Ben would look from side to side. If I could read his mind, I’m sure this is what I would have heard: “Hey, mom’s there! And Dad’s over there! This is GREAT!!! You guys are never here in the morning. Okay, what are going to do now…did you know I can roll….this mattress makes a cool sound when I tap it….boy this is fun….hi mom,….dad, take my picture….” Just hilarious how happy that boy is in the morning.

The rest of the family reunion was fun too. 🙂 Ben also went swimming in the lake, but he slept through the games. You can’t have everything in this life. 🙂